Coping with anxiety while waiting

Posted by ventibug @ventibug, May 29, 2018

I would welcome the suggestions of others for strategies for coping with anxiety while awaiting the next whatever. CT scans have never given me good news; I look forward to being surprised with good news after cycle 2 of chemo, when team takes the next look. Currently on a 2 week break from chemo due to the need for time to heal wound infection. Sent photos of healing progress to oncologist. I pretty much had it together that he would recommend another week of healing. He recommended 2 more weeks. Since Ive already had a recurrence (last CT news), i am worried my cancer is growing while I wait to be able to resume chemo. I dont disagree with the plan. My inquiry is how to cope with the anxiety? Things that work for me sometimes: knitting; getting lost in a good book; joking with friends; playing with my dogs; praying. Ordered Dr Amit Sood’s book today (thank you, llwortman) to improve mindfulness skills. All suggestions humbly appreciated, Ventibug

@maxaz1

This is a great topic…. 6 years ago my husband was diagnosed with Parkinson's Disease. We were horrified, and we spent the next 2-3 years waiting…Waiting for the next bad thing. We watched and waited for symptoms to develop. We interpreted every little twitch as the beginning of the end. We were in full panic mode, anticipating and dreading the worst possible developments. It took us that long to learn to cope with the fear, the depression, the anxiety…until we finally understood that the advice and care the doctors were giving us was empowering – allowing us to live our lives with the best possible outcomes. Note that I speak as though we both got that diagnosis….After being married to this guy for 38 years, that's what it feels like. Our best days have come from enjoying our family, being together doing the daily activities of life – as well as we can, as much as we can, we talk about the symptoms that have developed – to the doctor, to our family, to each other. Shame and embarrassment and dread no longer control our daily life. Small pleasures are the best!

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Very helpful. Thank you.

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@maxaz1

This is a great topic…. 6 years ago my husband was diagnosed with Parkinson's Disease. We were horrified, and we spent the next 2-3 years waiting…Waiting for the next bad thing. We watched and waited for symptoms to develop. We interpreted every little twitch as the beginning of the end. We were in full panic mode, anticipating and dreading the worst possible developments. It took us that long to learn to cope with the fear, the depression, the anxiety…until we finally understood that the advice and care the doctors were giving us was empowering – allowing us to live our lives with the best possible outcomes. Note that I speak as though we both got that diagnosis….After being married to this guy for 38 years, that's what it feels like. Our best days have come from enjoying our family, being together doing the daily activities of life – as well as we can, as much as we can, we talk about the symptoms that have developed – to the doctor, to our family, to each other. Shame and embarrassment and dread no longer control our daily life. Small pleasures are the best!

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Adding to my post….Make no mistake. We have our moments of fear and depression and days where we, individually or both, take our long naps to escape the reality of difficulties of daily life. But knowing that we can recover from a pessimistic outlook, and that there is a lot of life to still be lived, helps a lot.

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@maxaz1

This is a great topic…. 6 years ago my husband was diagnosed with Parkinson's Disease. We were horrified, and we spent the next 2-3 years waiting…Waiting for the next bad thing. We watched and waited for symptoms to develop. We interpreted every little twitch as the beginning of the end. We were in full panic mode, anticipating and dreading the worst possible developments. It took us that long to learn to cope with the fear, the depression, the anxiety…until we finally understood that the advice and care the doctors were giving us was empowering – allowing us to live our lives with the best possible outcomes. Note that I speak as though we both got that diagnosis….After being married to this guy for 38 years, that's what it feels like. Our best days have come from enjoying our family, being together doing the daily activities of life – as well as we can, as much as we can, we talk about the symptoms that have developed – to the doctor, to our family, to each other. Shame and embarrassment and dread no longer control our daily life. Small pleasures are the best!

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@maxaz1

Thank you for sharing your new found approach to waiting! It sounds like a healthy transition to this "new normal." By the way, your picture is just great – you both look very content and happy.

Teresa

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L
LL had pain in my head,and had to go to er. they said I have brAIN CANCER. i HAVE TO WAIT 6-7 WEEKS TO SEE A DR. iS THIS NORMAL

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@brown1

L
LL had pain in my head,and had to go to er. they said I have brAIN CANCER. i HAVE TO WAIT 6-7 WEEKS TO SEE A DR. iS THIS NORMAL

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when I was told I had to wait 3 wk I called the patient advocate in the hospital and was in in a wk. Insist politely. Good luck!

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Welcome to Connect, @brown1
Different doctors and institutions have different wait times. Hearing you have a brain tumor is stressful and challenging. No doubt you will have questions about the diagnosis, treatment options and what will happen next. You may wish to seek a second opinion.

Brown, I'm not sure if Mayo Clinic is an option for you. At Mayo Clinic, we offer appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. Here is the online form and contact numbers for our 3 campuses http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-access program.

Brown, when you went to ER did they confirm a diagnosis of brain cancer or is it a suspicion and the next step is more diagnostic testing?

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@brown1 I am so sorry about your situation. What made the ER come to that conclusion? Did they actually do testing to make an accurate diagnosis? Have you called around to other Dr's to see if you can get an earlier appointment? I would recommend calling another DR. Get at least 3 opinions.
Please keep us posted as to your outcome. But I recommend calling more Dr's to see if they can get you in for testing sooner.
I wish you the best.
Jackie

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Hello @brown1

I see that this is your first post and I appreciate your sharing with us about your new diagnosis. I am so sorry to hear of your brain cancer – I can understand why you are concerned about waiting 6 – 7 weeks. Whether or not this is a normal wait time for an appointment depends on where you live and the doctors who are available in your area who can treat this type of cancer.

If you are comfortable sharing more information could you tell us: Did they tell you what type of brain cancer you have? Did they mention the size or the grade of the tumor or lesion and what part of the brain the tumor is located? Have you previously had cancer of any other type? These are all important questions to consider as you seek treatment.

If you don't want to wait 6 – 7 weeks you can always call other good facilities and find out who is available to treat this particular type of brain cancer. Do you live near a cancer research center or a university medical school? It is probably important that you have a good doctor, highly experienced, as well as a good medical facility.

Here is a link to a discussion here at Connect for others dealing with Head and Neck Cancers, https://connect.mayoclinic.org/discussion/meet-others-living-with-head-neck-cancer-come-introduce-yourself/?pg=1#comment-79534. As you read through these discussions, you might find some good information as well as support. Here are some Members how have previously mentioned Head and Neck Cancers, @jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace. I would like to invite them to join you in this discussion.

Please keep in touch and let me know how you are doing. I look forward to hearing from you again.

Teresa

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@maxaz1

This is a great topic…. 6 years ago my husband was diagnosed with Parkinson's Disease. We were horrified, and we spent the next 2-3 years waiting…Waiting for the next bad thing. We watched and waited for symptoms to develop. We interpreted every little twitch as the beginning of the end. We were in full panic mode, anticipating and dreading the worst possible developments. It took us that long to learn to cope with the fear, the depression, the anxiety…until we finally understood that the advice and care the doctors were giving us was empowering – allowing us to live our lives with the best possible outcomes. Note that I speak as though we both got that diagnosis….After being married to this guy for 38 years, that's what it feels like. Our best days have come from enjoying our family, being together doing the daily activities of life – as well as we can, as much as we can, we talk about the symptoms that have developed – to the doctor, to our family, to each other. Shame and embarrassment and dread no longer control our daily life. Small pleasures are the best!

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@maxaz1 distraction has always worked for me especially when it is in the form of action. Reading, writing, music, puzzles, painting, drawing, coloring, taking pictures, walking, swimming, driving, phone calls/ texts, surfing the internet & posting/ replying in forums, blogs & group conversations are particularly low to know impact actions for people with limiting health issues

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@brown1

L
LL had pain in my head,and had to go to er. they said I have brAIN CANCER. i HAVE TO WAIT 6-7 WEEKS TO SEE A DR. iS THIS NORMAL

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Dear Brown,

It has been five hours since your post, and you have received the best advise I have ever seen in such a short time. I hope we are not overwhelming you!
It has been five years since my surgery for mouth cancer; but I still remember when I was diagnosed as it had been a week ago. And I will give you my spill about organizing, because you have already gotten very good advise about looking for doctors and about Mayo Clinic. The only contact I have had to Mayo, is my sister's cancer and this blog. I have spent lots of time at Mayo Scottsdale, where my sister had her treatments, and it has been first class in every way.
Well, right after I had my diagnose, I had a pep talk with God. He gave me fortitude. My second stop was at Staples, where I got a binder, dividers and paper. I called it "my life project". First divider was for doctors. I got some recommendations and researched them on line. Printed the pages with their resumes and pictures and placed them in the binder. Second binder for several copies of my diagnose. Third for several copies of my medical history. Fourth for medications. Five for questions and paper for answers, and so on and so forth. Very important, a divider for cards. You will collect cards from the different doctors that will be involved in your treatment. Organizing yourself will take the time you have to wait for your appointment, and have you focused in a positive way.
Please have someone come with you to your appointments and take notes and remind you of your questions.
Hope this advise will help. And I wish you success!

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@cweeks18

HI TERESA, MY NAME IS CHUCK, I AM A SAILOR AND NOT SMART WITH WORDS, IE,ANXIOUS , WHEN OUT A SEA, I AM ANXIOUS TO GET HOME. BUT I DONT LIKE ANY THING ABOUT MY CANCER. BBUUT I SURE LIKE GETTING HOME. RESP. CHUCK.

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@cweeks18 Let us remember there is both positive & negative anxiousness. Sometimes we experience them at the same time like when we're having a consultation. This is commonly referred to as mixed emotion. It is normal as long as we handle it accordingly to benefit not detriment.

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@54321

I am dealing with only 20% kidney functionality – not really the same issues as your illness. I am not sure when I will am going to have to start dialysis but I know it will have to at some point.
I am on pins and needles every time I have to see Dr ( now it will be nurse NEULOGY – will be seeing me approx every month. So nerve racking. I really would like more info per visit. This waiting is awful.

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@54321 Even though I have no clue what it feels like to have failing kidneys I am no stranger to challenges of survival. When your down & out please come to Mayo Connect where we all have 1 major thing in common – we are all there for each other with strength in numbers. We honestly want a better quality of life for each other regardless of rather we are donor or recipient or both. There is always someone to share the ups & downs with & that always turns grief in to relief if even but for a moment. But that is a moment born in humanitarian spirit of love & kindness

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@hopeful33250

Hello @54321 and welcome to Mayo Connect.

I am glad that you posted about your anxiety about waiting. Even though the health issues are different – the stress of waiting remains the same, doesn't it?

You mention wanting to get more info per visit. That is a great idea. It is good to advocate for yourself and get as much information as you need to be comfortable about what it going on with your health.

Have you considered writing down the questions you would like to have more information about and then asking the doctor or nurse? Sometimes this will help to organize your thoughts before the visit.

I look forward to hearing from you again as we all continue our waiting.

Teresa

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@54321 @hopeful33250 Seven days I would not have been able to appreciate how hard waiting is but you are not alone. I would love to immediatly schedule a transplant surgery as a donor want to be. But I also know success in these matters depend heavenly on making sure all the T's are crossed & It's are dotted. There are great tips & ideas for people on this journey to handle stress including using Mayo Connect to follow stories of people like you & I.

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@stellgma

I had a brain cat scan at Mayo yesterday and will be needing open brain surgery in a few weeks. I feel extremely anxious and scared. The anticipation of the “what if’s” that could happen is the scariest.

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@stellgma Hopefully all goes well with you & yours during these all around trying times. Have faith there is hope for you. I have a friend who has lymphoma cancer (brain lymphoma) for which surgery & chemo are not options. She has such a positive attitude it takes someone who knows her well to see right through her to her anxiety. In her words "The silver lining is knowing my family will miiss me but my death will not be in vain." To me she is beautiful inside & out.

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@maxaz1

This is a great topic…. 6 years ago my husband was diagnosed with Parkinson's Disease. We were horrified, and we spent the next 2-3 years waiting…Waiting for the next bad thing. We watched and waited for symptoms to develop. We interpreted every little twitch as the beginning of the end. We were in full panic mode, anticipating and dreading the worst possible developments. It took us that long to learn to cope with the fear, the depression, the anxiety…until we finally understood that the advice and care the doctors were giving us was empowering – allowing us to live our lives with the best possible outcomes. Note that I speak as though we both got that diagnosis….After being married to this guy for 38 years, that's what it feels like. Our best days have come from enjoying our family, being together doing the daily activities of life – as well as we can, as much as we can, we talk about the symptoms that have developed – to the doctor, to our family, to each other. Shame and embarrassment and dread no longer control our daily life. Small pleasures are the best!

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@maxaz1 Thank you for sharing both positive & negative repercussions of major illness. Some useful techniques I've learned are not to dwell on the symptoms except when they cannot be ignored at the moment, when they can't be ignored distraction by focusing on something meaningful (interaction with an animal/ person, research of whatever your IT is) to you. It can be inanimate or living as long as it drives you to do more so that it takes your mind off of the symptom. Though it may not replace the symptom it should relieve it.

Liked by beckyjohnson

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